At this time last year I was out of my mind. And the worst part was that I didn’t know it. It was just another day in the life as far as I was concerned. I knew I was depressed, that was obvious, and I cried wildly for sometimes hours a day. I had a day job (this was pre-Ebert, and pre-my freelance writing career kicking off), and, looking back, I am amazed that I was still able to get my ass to work every day. But I was white-knuckling it, and I know how to do that. The thing about being out of your mind is that there’s obviously not a clear line in the sand, where you are suddenly somebody else, or you’re thrashing about insensibly. Life goes on. You’re looking at things through a warped mirror, but you don’t know it’s warped. What you are seeing comes across as reality. I’ve been living this way my whole life.
In around November or December of 2012, as I started spinning down, I remember thinking to myself, almost flatly, it was totally matter-of-fact, “I’ll be feeling better around May, probably.” 5 months. I know the drill. This wasn’t my first time at the rodeo. But I knew I was in for a rough haul and I needed to hunker down. At least I was going to Memphis. I looked forward to that. I do well in hotel rooms. The cares of everyday life, even of my identity, get washed away, and I am left blank, pure. Things feel different. In the state I was in, my family did not want to let me go to Memphis. But from my perspective it was perfect timing. Why is everyone so worried about me? I’ll be feeling better by May! was my perspective.
I realize that the word “normal” is a trigger for some and you are not supposed to use it. What is normal anyway? It’s meant to take the pressure off of those who feel they don’t fit in. I understand that but for me, now, when I’m feeling better than I’ve felt ever, “normal” is a good word. It’s bracing. It helps me realize the illness, it helps me to perceive it, whereas before I couldn’t see it at all. After all, I only know what it’s like to be myself. Saying to yourself in December that you know you will be feeling better by May is a red flag that something is wrong. “Normal” people who do not suffer this way do not go through such things. They have emotions, but they have more resiliency with said emotions, and they are not completely flattened for months at a time. Don’t even bother arguing the opposite. It’s offensive. It’s important to actually listen to those who suffer and stop making inappropriate comparisons. (“I know what you feel like. When Bob and I broke up, I was super sad.” You know, that kind of thing. I am talking about illness, not sadness. This is why mental illness is so misunderstood and feared, but if people would just LISTEN more! Lecture over.) From inside my own head, that kind of timeline WAS normal. Please, I’ve been through worse, I went through 1994, I went through 1998, 2002, I went through 2009, the mother of all bad years, I’ll make it through this one.
I arrived in Memphis the day after Christmas to four phone messages, one from each family member. Everyone was holding back tears, everyone was saying how worried they were, everyone was rallying around me telling me I was sick and needed help and they would help me get help. I was extremely embarrassed. I am a grown woman, I live on my own, I make my own way, I am responsible and independent. I have never bounced a check. I honor my agreements. I’m not a total fuck-up. Nobody was saying I was a fuck-up but it is hard not to hear it that way. However, my family had obviously ganged up on me, and made a plan to all call me at the same moment, while I was airborne, and so it was an onslaught of love and concern and I knew that … well, I just listened. I didn’t throw the phone into the nearby garbage can. I listened.
When I returned from Memphis, which had been a real respite, I went back to work (again, the mind boggles) and in a day or so I had plummeted to the bottom of the ocean. Emotions are on a bungee cord, in other words. I staggered through life. I don’t remember much of it. But everything was “out” now, which actually was freeing. It is embarrassing to admit you need help and I am not sure I would have if my family hadn’t turned themselves into a SWAT team behind my back. I was faced with a choice: accept help, or reject help. If I rejected help, there would be consequences. I suppose it’s like an intervention with alcohol or drug addiction. I can be quite forbidding and I am very proud. But at this time last year, I was too tired. I was broken down. I couldn’t fight it anymore.
My cousins were also involved in all of this. My whole giant Irish family was involved. It was mortifying. I was scared of all of them. I remember starting to cry at the gynecologist’s office during my regular checkup. It was super dignified. My doctor was very nice and I asked if she could give me a prescription for antidepressants since obviously I needed them. She wrote me up a scrip.
This was in mid-January last year. Now that I know more about the illness that I actually have, it is a bit annoying to realize that what was happening was text book. Dammit, and I thought my misery was original!
And I know now how dangerous the situation really was. For those with my diagnosis, antidepressants are extremely dangerous. We are often mis-diagnosed as having either depression or anxiety. Also: this was my gynecologist. She’s a doctor, she listened to what I had to say, and she gave me a scrip, and told me to call her if I had any problems with the medication. But it’s chilling to think of what might have happened if I had actually filled that scrip. I would have been taking the meds without anyone monitoring me. This is often how it goes with “us”. But what antidepressants do to “us” is to take that which is at the bottom of the ocean and fling it up into the stratosphere in one fell swoop, and the dramatic change can often bring on psychosis and suicide attempts. Basically, it’s like the cloud cover pulls back in 1.2 seconds revealing a blue sunny sky, and while yay, that might be happy, it often leads to complete mania, as well as renewed energy to follow through on all of those “Maybe I should just slip into the tub and open a vein” thoughts. Very very dangerous. Mood disorders are still not very well understood, although progress is being made. One of the “tells” that depression is not the real issue to a doctor (who is paying attention, that is) is if the person put on antidepressants feels better in a matter of days. With classic text-book depression it takes a couple of weeks to feel the effects (which is, of course, agony, to the depressive who needs to feel better NOW). But with my diagnosis, we bounce right back. It SHOULD be a “tell”, anyway. A doctor put me on antidepressants in 2002 and I felt better in 3 days. Like, skipping down the street better. And this was a psychiatrist, who was monitoring me. That should have been a “tell” to her. I could have been diagnosed way back then. I should sue for malpractice, honestly. I’m still angry.
I had my prescription and I was also trying to find a therapist, which is not easy when you are basically Googling “I’m cray-cray, please send help” from the bottom of the ocean. You can’t even make this shit up but before I popped my first pill, I got a text from my cousin saying, “I just talked to so-and-so” (her uncle, who is a psychiatrist specializing in mood disorders who knows our family history) “and he says to not go on antidepressants, whatever you do.” I felt completely helpless and not able at all to manage the situation. I needed to feel better NOW. I was in agony. It’s impossible to describe. Like, all you can do is pace and wring your hands. For hours. So I had a three-way phone conversation with my cousin and this uncle (whom I have never met, but I owe him my life). Bless my cousin’s soul, she took notes for me, throughout. And asked the questions that needed to be asked. Because I was too out of my mind to ask questions. She was there, asking him to spell stuff, asking him to clarify, prompting me to “tell him about such-and-such, Sheila.” He was calm and cool, and did not diagnose me over the phone, but spoke to me about our family history and how these things work, and he said some scary words that were unfamiliar to me (but now have entered into my lexicon, no biggie, I can talk about them all). He gave me some website recommendations, he gave me some next steps (all of which were daunting, including finding a doctor), he warned me about antidepressants, and he told me to keep in touch. We talked for a couple of hours. When we hung up, I actually felt better.
There is a peace that comes when you give up, when you decide you need help.
My cousin who had set this up re-hashed it with me, underlining what she thought was important, underlining things uncle said that she thought I needed to keep in mind. I needed that. It would have all been a wash without her.
So I threw away the antidepressants. Thank Christ. I reached out to someone who I knew could help. We had a long conversation. He was understanding, he’s been there. He hooked me up with his doctor, who was in New York. I hated every second of this process because with every step I was moving away from Life as I had lived it. That life may have been filled with anguish (not always, but often enough), and an almost superhero-level of power to white-knuckle things, but it was what I knew. It was how I had lived since I was a child. I had been in therapy for 7 years, in my late 20s, early 30s. I went down into two troughs under her watch, and apparently no red flags were waved for her, and she’s another one I want to sue for malpractice. I am extremely anti-therapy for that reason. And here I was strolling back into the therapy landscape. But this felt a little different. I wasn’t talking to some chick in a nice office about the stresses of my week. I was talking to a medical doctor who specialized in moods. It made a difference, especially since I walked into this whole thing with a justifiable chip on my shoulder about the usefulness of therapy.
It is only with perspective, and a REAL respite, doctor-ordered, that I can even perceive how bad things were. You just can’t see it when you’re in it. So I made an appointment with this doctor. He told me later that after talking to me for the first time, he was “very worried” about me. Again, for me, misery like this is just another day at the office, so I had no perception that anyone should be worried about me at all. His office was warm and inviting and I still feel myself relax automatically when I walk through the door. He asked me questions. I answered. I was honest. He gave me a form to fill out. We talked for an hour. Before I left that room he told me what he suspected, in terms of a diagnosis. It was too early to say for sure, but all the signs were pointing in one direction. It was pretty devastating. But I listened, trying to take it in, and he also told me that I was extremely rare. Like, 1% rare. I’ll get into what he meant in a minute. After hearing my history, he told me he thought I had been walking around undiagnosed for almost my whole entire life (since age 12, although it probably showed up before then). People who are undiagnosed with my particular illness do not end up well. They are drug addicts and alcoholics, mainly. They have been in and out of psych wards. (I realize now that I should have been hospitalized in both 2002 and 2009.) People with this diagnosis are impulsive sexually, which leads to all kinds of problems, medical and otherwise. Humorous side note, and it may be offensive, but it’s also why it’s funny. I was emailing with Michael recently about all of this, and I said, “People who go undiagnosed for as long as I do are usually raging alcoholics, in jail, or promiscuous sluts. I am none of these things, although sometimes I wish I was that last one, because at least I’d be having some fun.” Michael responded, “You would’ve made a fine promiscuous slut. That should be your only regret, and it’s never too late for that, you WHORE!” I take it for the compliment that it is. Not every ex could scream “you WHORE” and have it come across as a fond endearment but Michael can. I’m still laughing about it.
So anyway, with undiagnosed people they get into self-medicating early on, and by the time they actually get diagnosed they are full on addicts. The addiction has to be handled before the illness can even be addressed. I don’t do drugs. Never have. I drink (well, not anymore) but certainly not to alcoholic bar-fly levels. If I look at the drinking, then I can see that since 2009 I had been drinking more, and now I can see it was expressly to handle what was going on inside. I rarely got drunk. I don’t go to bars, I don’t “party”, I’m not into that. But the alcohol was serving a purpose: My baseline mood was so low, that even a couple glasses of wine felt like they yanked me up to other people’s baseline, which wasn’t so low. I could probably illustrate this with a diagram or graph if I knew how to create one. There was also the sugar factor in wine, which is key, and is the main reason I don’t drink anymore. Sugar is very important, and must be avoided with my diagnosis. We crave the high in a way that others might not even perceive or understand. It’s not about the BUZZ from the wine, it’s about the SUGAR.
But the drinking I was doing can’t hold a handle to what other undiagnosed folks normally do. These are lives filled with wreckage, both from the addiction and from the illness. They can’t hold down jobs. They’ve been in jail. They are homeless. They are alcoholics or junkies or coke addicts. And, actually, more often than not, they are NONE of these things, because they are fucking dead.
I don’t fit in with any of that. And I have been living undiagnosed since I was a tween. My doctor said to me, “You are a walking miracle”, and hearing him say that … it bolstered me up for the fight ahead. He reminded me of how strong I am, how much I have held on, how much I have NOT gone off the rails, through sheer white-knuckling will power. This is something one needs to hear when one is as broken down as I was. I almost wasn’t sure that he had actually said those words, so I wrote them down in my journal just to have a record of it. So I could recall it if I needed it.
The track record for people like me is shattering, the statistics are terrifying. Even now, with all the books I read, I get a chill looking at the way these things normally go in black-and-white, with pie charts, etc. In the beginning, I didn’t understand how rare it was, that I wasn’t an alcoholic or a drug addict. Now I get that that very fact is also the main reason that I “took” to treatment as well as I did. I didn’t have all that other shit in the way. I could get down to business. There were no addictions to manage. The second I got diagnosed, I stopped drinking altogether. I don’t miss it at all, not even when I go to parties. It just wasn’t a big part of my life, ultimately. So it’s funny, as I’ve gone through this process, as I have come into contact with other doctors who know the track record for this diagnosis, all of them almost look at me like I am an endangered species. “Well, I don’t do drugs …” “That is ….. amazing. I hope you realize that.” Back to the whole “normal” conversation: it is helpful to know what is normal and what is not normal. It is helpful to know what things NORMALLY look like, so that I can understand where I differ, or where I intersect.
I started treatment with this doctor. I was angry with him at first, telling him I “would walk” if he told me I had to stop writing or loving movies or having crushes on actors. I seriously was afraid he would want to iron me out, homogenize me, take away what was me. One notable comment from my second session with him, was me saying, like I was fucking Jimmy Cagney: “If you tell me I need to give up Elvis, then you and I are done.” I meant it. He was unruffled, said calmly, “Elvis has nothing to do with the illness. Once you get the illness handled, you will actually be MORE productive with your projects.” I was unconvinced, said, “Huh.” rudely. But we got through that phase pretty quick. I am sure that was all “text book” too. My mother came down and stayed with me during this process. I was still out of my mind, sleeping 4, 5 hours a night, and crying randomly and wildly. I honestly needed to be taken care of, even though I didn’t really have the presence of mind to ask for it, or even perceive the need.
Humorously, as in, Life sometimes happens this way although it seems totally phony-baloney: the day I got my proper diagnosis was also the day I got my first email from Roger Ebert, offering me a job.
Honestly, life? For real? You couldn’t give me one day in between those two events? No? Same day?
It took two months of intense treatment (with the doctor, as well as with a therapist) to stop the progress of the downward spiral. I can only see that now. If I could put it into an image, it would be that of snapping a jump rope so that it buckled like a whip, and the curls of the rope wave up and down, until someone on the other end grabs hold of the rope, pulls on it, and the rope goes straight. That’s what those two months felt like. Someone jerked on the other end of the jump rope, and everything went straight. For the first time in … ever? It was unbelievably obvious. It was only through a calculated process of sleep recovery, started in mid-April, that the clouds actually cleared in a way that, honestly, they’ve never cleared for me. I haven’t slept over 6 hours a night in about 20 years. This has devastated my emotional resiliency, perhaps permanently. But the brain can recover. Sleeping 8 hours a night became The Entire Purpose Of My Life. Along with, oh yeah, traveling to Illinois for Ebert Fest, and covering the Tribeca Film Festival, and writing my first reviews for Roger Ebert. I mean, it was insane. But I was able to do it. I had to clear the deck. All I did, honestly, all I did during those two months was 1. Write and 2. Exercise and work on getting 8 hours of sleep a night. It’s not rocket science. But sleep deprivation is a gigantic part of the illness and it is how it introduces itself and it is how it re-trenches itself.
Sleep recovery was the real key for me. I’ve had a rough winter, again, and it probably has something to do with the lack of light during the winter months. Suddenly I was backsliding, I was only needing 5 hours of sleep. It was ominous. But I was feeling GOOD, I didn’t WANT to course-correct. Why is it bad that I am feeling productive on only 5 hours of sleep? This is the insidious nature of the diagnosis, its seductive positivity, its beauty and clarity. It is nearly irresistible. A siren call. But I remembered, yet again, my SWAT team family, and I remembered, yet again, that this is the first year where I actually have had some distance from my own condition (that I didn’t even know I had) – where I can actually SEE it. By June, July of last year, I was honestly baffled that I had lived the way I had lived for as long as I did. I also finally, finally, could understand why the doctors were so amazed that I wasn’t an alcoholic, a drug addict, or a “WHORE!”, that I managed to have a job, that I was responsible with money, blah blah. The more I understood about this monster, the more I understood that my “white-knuckling” it, as awful as it always was, saved my fucking ass. I am freakin’ IRON MAN.
But I don’t want to be Iron Man anymore. Being Iron Man ruined my life. And, besides, Iron Man was breaking down anyway and getting tired.
The last time I remember crying, wildly, for both no reason and for reasons of gigantic nameless existential dread, was Valentine’s Day of last year. I walked down 10th Avenue on a grey morning, and I was that person you see, in public, crying. I held it together until I got home, and my mother had sent me a Valentine’s Day gift, little socks with hearts on them, and I threw myself on my bed and cried for … hours. Literally. Hours. Passed out there.
I look back on my own blog and see that I actually did a couple of posts that day, in the morning. Exhibit A of White-knuckling.
I consider that Valentine’s Day an important marker. I know I will obviously cry again, and I have certainly cried since then, but crying like that? I know now what it is. It has fear in it, misery like that, it is filled with fear, the pain is so great that it is frightening. And THAT I don’t want anymore. I no longer will dig my heels in to defend it, or say “These are my FEELINGS. Stop telling me to not have feelings.” No. Those are not my feelings, that is ILLNESS wreaking havoc on my body and spirit. There is legitimate sadness and then there is illness-sadness, and illness-sadness can actually be fought against and combatted, although you need to learn the tools. Which I have been learning and practicing ever since I was booby-hatched into treatment. You have to be willing to say “No” to certain trains of thought, you have to learn how to separate out what is your personality and what is the illness (super hard, especially if you go undiagnosed as long as I have), and you have to be firm with yourself in avoiding dangerous areas. This is all tied up in so much else, basically you have to feel like you are WORTH being saved, being healed, being helped. It’s a whole paradigm shift, and it didn’t come overnight and I am still working on it. But not alone. I could never have done one second of this alone.
I am coming up on a year now of getting the diagnosis. Things are good now, but I am still chastened enough by the illness to respect it. I must never lose that respect. But I am also, tentatively, trying to befriend it. And not fear it. Just get to know it a little bit, get to know how it operates, and continue to keep in mind that NOTHING is possible if I don’t get at least 8 hours of sleep a night.
I salute my other comrades in illness, those who have suffered similarly. I know what it means. I know what it feels like. I know the agony.
I have decided to share some of this because my doctor encouraged me to write about it, and I also actually just felt like writing about it. I know there are people out there who understand, who have been through similar things (if not in the particular details), and so it helps to express it. Maybe my words will find you. Maybe they won’t.
But thank you for reading anyway.